Conferences
2024 HFA Symposium Travel Scholarship
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Applications are due by January 29, 2024
Arizona Bleeding Disorders is pleased to offer a Travel Scholarship Opportunity for an AZBD member family (up to 4 individuals) to attend the Hemophilia
Federation of America Symposium in Indianapolis, Indiana, April 11th-13th.
It’s a great way to connect with your friends, get some of those hugs you’ve missed, attend valuable educational sessions, and enjoy the sights of Indianapolis! It’s one of the largest, family-friendly events for members of the bleeding disorders community, where you’ll find:
- Sessions on advocacy, pain management, addiction, parenting, women and girls, and more.
- Education for rares, milds, severes, and moderates in both English and Spanish.
- Rap sessions for blood sisters, blood brothers, families, Sangre Latina, milds, and spouses and partners.
- And an exciting Final Night Event!
Applicant family must be diagnosed with a bleeding disorder. If you have any questions, please call our office at (602) 955-3947.
The selected family will be contacted and announced by February 9, 2024. The scholarship includes travel and hotel accommodations for four people. Additional members may attend but would not be covered by the scholarship.
Below is information regarding the HFA offered scholarships for Symposium attendees. Please make sure to read the criteria for below before applying. To apply, please click above to register and the scholarship form will be available as an “add-on option”.
General Hotel Scholarship
Eligible: Members of the bleeding disorders community coming as a general attendee.
Not eligible at this time: Exhibitors, medical personnel, industry professionals, and non-profit staff.
- This scholarship is for one (1) hotel room, for up to four (4) nights. Any additional nights or rooms will be on your own.
- First-time attendees receive priority. Previous attendees will be considered dependent upon space and availability.
- A maximum of 4 individuals per scholarship (One hotel room per family).
- This scholarship DOES NOT COVER registration fee(s), parking, or travel/flight.
Indiana Local Hotel Scholarship
Eligible: Members of the bleeding disorders community coming as a general attendee.
Not eligible at this time: Exhibitors, medical personnel, industry professionals, and non-profit staff.
- This scholarship is for one (1) hotel room, for up to four (4) nights. Any additional nights or rooms will be on your own.
- Must live a minimum of 45 minutes or more away from the JW Marriott Indianapolis Hotel.
- A maximum of 4 individuals per scholarship (One hotel room per family).
- This scholarship DOES NOT COVER the registration fee(s) or parking.
NACCHO
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The 2024 Conference dates will be announced soon
The 2024 NACCHO Conference
The AZBD is able to organize a specialized annual conference that focuses on the work of bleeding disorder summer camps.
Designed by a planning team from across the country, NACCHO (North American Camping Conference for Hemophilia Organizations) is facilitated by nationally known presenters and leaders from the bleeding disorder community who share useful camp resources and techniques. Participants can exchange resource materials, meet with representatives from NHF, pick up new ideas, and share their most successful endeavors with people from other camps.
We will provide education and learning opportunities through five major interest tracks:
- Administration Track: All the nuts-and-bolts sessions on how to budget, market, promote, insure and manage camp – including facilities management, registration, policies, purchasing supplies for camp, and much more.
- Campers and Parent Track: All sessions relating to child/youth development in theory and in practice, contemporary parenting issues, working with children with behavioral challenges, sending children home, developmental or practical issues related to bleeding disorders, as well as current topics relating to working with parents, building partnerships, setting limits, and enforcing camp rules.
- Programs and Activities Track: All sessions related to instruction in sports, arts, adventure, and waterfront operation.
- Staff and Leadership Track: Sessions within this category fall into two areas: those relating to staff hiring, training and management; and those relating to camp leadership theory and practice, cultivation and training, vision, ethics, community building, and establishing or changing camp culture.
- Medical Services Track: All sessions related to the providing of medical and social services at camp. Should you have any questions regarding NACCHO, please feel free to contact us at (602) 955-3947 or by email: NACCHO@arizonahemophilia.org
If you’re interested in joining us, please click below to join the interest list and you’ll be the first to know about all the details for our next NACCHO Conference!
Share and Swap Ideas
Submit a 2-minute video or montage about your idea to NACCHO@arizonahemophilia.org.
- Extra points for ideas other can easily replicate with little expense.
- Make sure your camp’s name is featured in the video.
- Please do not use copyright music in video!
- All entries will be shared online! Please make sure you have permission to share.
Call for Speakers
If you are interested in contributing to a panel discussion or leading a breakout session at NACCHO 2024, please complete the Potential Presenter Form.
Thank you for taking the time to give back to the camping community. Your submission to present at NACCHO 2024 is appreciated and we will let you know by early December if you have been selected.
Helpful Documents
NOW Conference
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The 2024 Spring NOW Conference will be live in person November 22-24, 2024 in Phoenix Arizona.
Registration for this conference is full. Please complete the application to be placed on a waitlist.
NOW is a national educational conference for individuals and families who are living with this chronic disorder. It is a forum to learn about new medical advances, to gain tools that can help you better manage von Willebrand Disease (VWD), and to share with others facing the same or similar challenges. We will bring expert healthcare professionals who can best address the issues unique to VWD. With funding by a grant from CSL Behring, the AZBD is excited to organize this national conference focused specifically on von Willebrand Disease.
NOW stands for National Outreach for von Willebrand. Over the years, von Willebrand Disease (vWD) has always been “lumped” in with hemophilia. Well, NOW is the time to focus exclusively on von Willebrand Disease! NOW is a national educational symposium for individuals and families who are living with this chronic disease. It is a forum to learn about new medical advances, gain tools that can help you manage vWD and to share with others facing the same or similar challenges. We will bring in expert healthcare professionals who can best address the issues unique to vWD. Funded through a grant by CSL Behring, the AZBD is excited to host this national conference focused specifically on von Willebrand Disease.
Why You Should Attend
Be part of the National von Willebrand Disease Conference dedicated exclusively to those affected by the disease. Participants will be given the opportunity to come together with other individuals around the country with vWD to network, gain knowledge and have fun! Those who attend will be given the tools necessary to start their own local vWD Support Group, allowing the information gained from the conference to be shared at the local chapter level.
Eligibility
Attendees must have von Willebrand Disease and/or be a caretaker of someone who has it. The conference is funded to accept a limited number of participants. We encourage each chapter to reach out to the vWD Community in their local area to make them aware of this unique opportunity. Families are welcome as there will be educational activities and daycare for children.
Youth Programs
As part of the planning committee for the youth programming at the NOW conference, we try to find the delicate balance between providing education for the youth, but also having some fun.
While the parents are at their adult programming, we have the youth split up into two different groups 0-4, 5-12. The 0-4 age group are entertained by nannies.
The 5-12 age group participate in multiple educational and fun activities throughout the weekend.
We encourage teens, 13 and up, to attend sessions with their parents.
Registration for this conference is full. Please complete the application to be placed on a waitlist.
What is Included
If a flight to Phoenix is needed, it will be provided as well as a shuttle or taxi to the resort. Conference and hotel rooms for the dates of the conference will be provided. Dinner for Friday will be provided and breakfast, lunch and dinner will be provided on Saturday. Breakfast and boxed lunches will be provided on Sunday.
Refundable Deposit
There is a refundable deposit of $50 for an individual or $100 per family to attend the conference. Once your application has been accepted, we will send you the information to complete your deposit. Failure to respond in a timely manner could jeopardize your acceptance to the conference.
Testimonials
“Thank you so much for your involvement in this event. I cannot put into words how much this means to me.”
Attendee
“I have never in my life heard so much talk about von Willebrand Disease Type 2B. It is so validating to hear this!”
Attendee
(speaking after presentations made by Dr. DiPaolo and Dr. Kouides)
“I am so grateful to you all for organizing this conference. I have dreamed about a program similar to this one ever since I can remember.”
Attendee
“My career involves putting together large national conferences. It is apparent that you all hit this one out of the park. Everything flowed smoothly.”
Attendee
“In April, my family and I attended the Nation Outreach von Willebrand (NOW) Conference in Phoenix, Arizona. Now is an educational conference, organized by the Arizona Hemophilia Association and generously funded by CSL Behring. The Conference focuses exclusively on Von Willebrand Disease. The weekend was packed with presentations and panel discussions addressing a wide range of topics, from coping with the various challenges of living with bleeding disorders to recent medical advances. Because the schedule included several blocks of small sessions on different topics, that were offered simultaneously and then repeated once, attendees could really tailor their experience to suit their own needs and interests. The speakers were uniformly impressive. In addition to deepening my understanding of a chronic disease that my wife and son live with and getting practical advice from experts in the field, I got to meet and spend time with families from around the country who have their own stories to share. The conference really exceeded all of my expectations.”
Mike Hoernlein
“NOW is a national educational conference for individuals and families who are living with von Willebrand Disease (VWD). It is a forum to learn about new medical advances, to gain tools that can help you better manage VWD, and to share with others facing the same or similar challenges. Expert healthcare professionals are brought to the conference to address issues unique to VWD. With funding by a grant from CSL Behring, the Arizona Hemophilia Association is excited to organize this national conference focused specifically on von Willebrand Disease. Two HNC members were able to attend the conference this year. Following is some information about their experience in their own words. If you are interested in attending this event in the future be on the lookout for announcements from HNC. While HNC promotes this important event, all registrations for attendance and applications for travel assistance are handled directly by Arizona Hemophilia Association. If you would like to be placed on the mailing list for updates on future conferences, email Arizona Hemophilia Association at NOW@arizonahemophilia.org or follow their NOW Facebook Page for updates.”
Attendee
“A whirlwind – that’s one way to describe what happens in less than 48 hours with a full schedule centered around learning about, and living with, von Willebrand Disease. The bulk of the informational & educational sessions occurred Saturday. Dr. Montgomery’s address on VWD was definitely full of information, some of which I knew, and some of which was new to me. All was useful. I was thoroughly mesmerized by Dr. Sinha’s discussion of the Science of Stress (and how to manage it) – detailed studies of how stress affects our bodies & especially our brains, sleep, digestion, nutrition, etc. Much of what I personally have experienced with several chronic illnesses was clarified. I found challenging methods for dealing with these stressors, and hope to make use of them in the future. A second session from him dealt with learning how to sleep better; here again, this is a subject I need to learn for myself. On Sunday, Jerry Erwin, a certified trainer & leadership coach, a dynamic speaker, challenged us to discover WHO we are, and what charges our batteries – also learning what drains them, so as to avoid those drains. One of the other significant benefits from attending this meeting was the opportunity to network with other people with VWD. While I’m still in the “senior” category, I wasn’t the absolute oldest person in the room with the disorder! Oh, yes, one of the interesting facts gleaned from the medical experts is the discovery that VWD levels tend to increase as patients age. They don’t yet know what that means, perhaps that we need more, though that wouldn’t explain how or why our bodies learn to make more with age. It’s just one more piece of the puzzle. The final bonus for me personally was my ability to take advantage of the trip, and add a couple of days up front for personal time (paid for by me, of course), and the opportunity to spend the better part of one day on the south rim of the Grand Canyon.”
Linda Woodard
“Once again, I had the pleasure of attending the NOW Conference in lovely Phoenix, Arizona in November. This is a very beneficial conference for anybody with VWD, as the opportunities for education and networking are immense. It is designed for those of us in the bleeding disorders community with von Willebrand Disease to come together, connect, learn, collaborate and share information. Numerous breakout sessions include topics related to VWD and also others such as stress, nutrition, exercise, and advocacy. Several experts in the field, including Dr. Robert Montgomery, were available to answer questions throughout the weekend. My personal favorite speaker was Dr. Ronesh Sinha. He is very passionate about his work, and I learn something new each time I hear him talk. He did a session called Sleep Better Workshop this year and spoke about how insomnia is linked to so many diseases including diabetes, depression, and Alzheimer’s Disease. We were also taught key ways to increase our sleep quality and duration. I am always ready and willing to share my personal journey with VWD with others and listen as they share their stories with me. We spent time over the weekend doing just that. My hope is that through these connections we learn from each other and share information to help ensure that women are being diagnosed more easily and at a younger age than I was. The NOW conference offers something for every man, woman, and child in attendance, and I would highly suggest attending if you have von Willebrand Disease and have never been.”
Cheri Clark
Sponsors
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